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The Counseling Service Unit sought an intervention that would offer psycho-education and support based on the understanding that traumatic grief reactions were normal, understandable, and manageable. Interventions for at-risk children and adolescents after disasters generally focus on identifying and alleviating symptoms of posttraumatic stress disorder, major depression, anxiety disorders, and traumatic grief. The goals of the intervention were to educate and empower the bereaved mothers with knowledge of their children's stresses and grief experiences, to suggest ways they could support the children's coping, to encourage and enhance empathy between family members, and to offer solutions for the unique problems confronting the family. The children would be helped to express their emotions and reactions, understand grief and trauma reactions, and develop skills in managing intense emotions and ongoing reminders of the traumatic loss as well as in coping with changes in the family caused by the loss.

Context Care provided to seriously ill patients by frontline social workers is a component of generalist-level palliative care. The core competencies for high-quality generalist-level palliative social work are necessary to promote training curricula and best practices but have not yet been defined in the U.S. Objective The objective of this study was to develop consensus-derived core competencies for generalist-level palliative social work. Methods Fifty-five proposed social work competencies were categorized by the eight domains of palliative care identified by the National Consensus Project for Quality Palliative Care. The competencies were rated by 41 regionally dispersed, Master's level social workers selected through purposive and snowball sampling using a Delphi method. Each was rated as essential for generalist-level palliative social work, acceptable with modifications, or rejected based on the judgment that it was not essential for generalist-level palliative social work or was outside the scope of practice. Consensus was defined as >70% agreement to accept or reject a competency. Three review rounds were needed to achieve consensus on all competencies. Results Two competencies were added to the original list. Of the 57 proposed competencies, 41 were accepted (19 after modification) and 16 were rejected. Competencies in the social, spiritual, cultural, and ethical/legal aspects of care domains were relatively more likely to be accepted compared with those in structure and processes of care, physical care, psychological care, and care of patient at the end of life. Conclusion The 41 consensus-derived competencies for generalist-level palliative social work may inform the development of training curricula and standards for high-quality care.

Few data are available describing the involvement and activities of social workers in advance care planning (ACP).We sought to provide data about (1) social worker involvement and leadership in ACP conversations with patients and families; and (2) the extent of functions and activities when these discussions occur.We conducted a large web-based survey of social workers employed in hospice, palliative care, and related settings to explore their role, participation, and self-rated competency in facilitating ACP discussions. Respondents were recruited through the Social Work Hospice and Palliative Care Network and the National Hospice and Palliative Care Organization. Descriptive analyses were conducted on the full sample of respondents (N = 641) and a subsample of clinical social workers (N = 456). Responses were analyzed to explore differences in ACP involvement by practice setting.Most clinical social workers (96%) reported that social workers in their department are conducting ACP discussions with patients/families. Majorities also participate in, and lead, ACP discussions (69% and 60%, respectively). Most respondents report that social workers are responsible for educating patients/families about ACP options (80%) and are the team members responsible for documenting ACP (68%). Compared with other settings, oncology and inpatient palliative care social workers were less likely to be responsible for ensuring that patients/families are informed of ACP options and documenting ACP preferences.Social workers are prominently involved in facilitating, leading, and documenting ACP discussions. Policy-makers, administrators, and providers should incorporate the vital contributions of social work professionals in policies and programs supporting ACP.

Social work has a long history of providing support to people living with cancer and their families. The overall objective of the social worker in this setting is to support and equip the patient and those close to them to navigate and adjust to the impact of the disease on their lives. The social work perspective views living with cancer as an experience accompanied by a series of challenges as treatment decisions are made, side effects are endured, and relationships strained. For most patients, these challenges are managed with support from loved ones and their healthcare team. However, any one of these difficulties can develop into a crisis or a situation where customary methods of coping do not work and the person living with the disease feels overwhelmed. The focus of this chapter will be on the social work role during the crisis periods of the cancer experience.

Interviews conducted with adolescents living with a dying parent were examined to identify the type of interactions the adolescents had with members of a hospice healthcare team. Four types of interactions were identified: No Interactions, In-passing Interactions, Engaged Interactions, and Formal Interactions. Results indicated that most of the adolescents had no contact with the hospice healthcare team or interacted with providers only briefly. Some adolescents reported more engagement with one or more hospice healthcare team members, and a few received formal counseling services from the hospice healthcare team or outside provider. Overall, limited contact occurred because of logistics or because the teens perceived that hospice services were exclusively targeted to dying patients, not their families. Based on these findings, strategies to increase engagement between adolescents and hospice healthcare team are discussed.

Recent research on the grief process supports the need to create a comprehensive model of mourning that more fully incorporates reactions to unexpected traumatic losses as well as to expected losses from illness. A more comprehensive model also needs to reflect an understanding not only of adaptation hampered by emotional problems and pathologies but also of resilient adaptation. Lastly, it requires an exploration of extrinsic factors affecting the mourning process as well as intrinsic factors – those that are intrapsychic, psychological, and emotional. Research has generally focused on individual intrinsic factors that affect the mourning experience. This article considers more recently identified extrinsic factors that can temporarily delay even resilient adaptations to the mourning process. It draws on both clinical and research experiences with a long-term (5-year) social work intervention with a cohort of 50 bereaved widows and children of fire-fighters who lost their lives as a result of the...

As the Association of Oncology Social Work celebrates its 25th year, we pause to reflect on the many historical threads that contributed to its development and hear from each of the presidents who helped create the organization, as we know it today. Set within hospitals, medical social work was born in the early 20th century. In the 1940s medical social work became necessary for hospital accreditation. Two additional historical shifts, one in medical improvements in treating cancer, the other a shift to a consumer-oriented American Cancer Society, contributed to the push for a greater role for the federal government in funding cancer research. Oncology social work came to full blossom in the 1970s, a result of the physicians' need for a member of the health care team who understood cancer, its treatment, and the patient's need to address his or her psychosocial needs resulting from cancer. Today, oncology social work is a fully developed profession with a national organization providing education and support to oncology social workers' in their use of psychosocial interventions and research in behalf of cancer patients and their families.

Objective:This study aimed to generate an explanatory model of the coping strategies that adolescents employ to manage the stressors they experience in the final months of their ill parent's life and shortly after their death.Method:The sample included 26 families of adolescents with a parent receiving care in a large hospice program in northeastern Ohio. A semistructured interview was conducted with 14 ill parents, 17 well parents/guardians, and 30 of their adolescent children before the parent's death and, additionally, with 6 of these families after the death. The interviews were audiotaped, transcribed verbatim, and analyzed using a grounded-theory approach.Results:The participants described two worlds that constituted the lives of the adolescents: the well world of normal adolescence and the ill world of having a parent near the end of life. The adolescents experienced a common challenge of living in two worlds and responded to the challenge with a process we labeled “managing two worlds.” Five stages through which adolescents manage their worlds were identified: keeping the ill world and the well world separate; having the ill world intrude into the well world; moving between the ill world and the well world; being immersed in the ill world; and returning to the well world having been changed by the ill world.Significance of results:The explanatory model of “managing two worlds” outlines a complex and nuanced process that changes over time. The model can be used by health professionals who seek to help adolescents navigate this critical time when their parents are dying or have recently died. These results can also be used to inform the development of interventions that assist families with strategies tailored to an adolescent's specific needs. Future research should investigate associations among the process of “managing two worlds” and outcomes related to adolescent bereavement.

When a parent is terminally ill, one of the major challenges facing families is informing children of the parent's condition and prognosis. This study describes four ways in which parents disclose information about a parent's life-threatening illness to their adolescent children.We audio-recorded and transcribed 61 individual interviews with hospice patients who were recruited from a large hospice in northeastern Ohio, their spouses/partners, and their adolescent children. The interviews were coded and analyzed using a constant comparison approach.Families inform adolescents about the progression of a parent's terminal illness in characteristic ways that remain fairly consistent throughout the illness, and are aimed at easing the adolescents' burden and distress. The families engaged in the process of disclosure in one of four ways: measured telling, skirted telling, matter-of-fact telling, and inconsistent telling. These results will inform the development of interventions that assist families with disclosure and are tailored to each family's communication style.

Osteosarcoma is the most frequently occurring primary malignant tumor of bone, especially in adolescence. Treatment involves either limb salvage surgery or amputation with neoadjuvant chemotherapy. This review article discusses the current treatment modalities for osteosarcoma and also compares the gait patterns and psychosocial profiles of patients treated with either limb salvage surgery or amputation for osteosarcoma. Contemporary orthopedic literature on therapeutic options for osteosarcoma patients is reviewed. Background information on the basic principles of kinesiology, with emphasis on studies of gait pattern differences among patients treated with limb salvage versus amputation, is presented. Finally, several studies of the psychologic profiles of patients after these two procedures for osteosarcoma are reviewed. Trends in contemporary orthopedic literature suggest that functional outcomes, in terms of kinesiologic parameters, are comparable for patients treated with either limb salvage or amputation. Both sets of patients reported quality-of-life problems, including difficulty retaining health insurance and finding appropriate employment, social isolation, and poor self-esteem. The management of patients with osteosarcoma includes not only an individualized surgical plan for each patient but also includes awareness of the patients' psychologic and social needs after surgery.

The need to reduce costs in the health care system has initiated changes that challenge social workers as well as other professions to reassess their roles and functions. While such a reassessment would optimally emerge from collaboration between school and agency, productive communication between them has been limited. This paper suggests ways to initiate this important dialogue by focusing on areas of mutual interest and concern such as (1) the development of adaptations to a cost conscious environment, (2) reassessment of the generalist/specialist balance, and (3) restructuring supervision, consultation, and continuing education. It is suggested that such a focused dialogue might reduce the perceived "widening gap" in communication and empower both school and agency to respond to the crisis with greater creativity and effectiveness.

This textbook on palliative social work is a companion volume to the Oxford Textbook of Palliative Medicine and the Oxford Textbook of Palliative Nursing. To that end, this chapter will accomplish the following

A two-stage study was undertaken of outpatients with advanced cancer who were receiving chemotherapy. In Stage 1 of the study, their needs for practical services and the barriers to those needs being met were assessed. Based on these results, an intervention was designed to reduce the prevalence of patients' unmet needs. The intervention was an automated telephone needs assessment coupled with social worker follow-up. The efficacy of this intervention was evaluated using an independent sample in Stage 2 in an experimental trial. Patients in the experimental group (n = 109), who received three automated surveys, reported fewer unmet needs in a subsequent comprehensive assessment than those in the control group (n = 130). The computerized telephone outreach system proved to be a cost-effective and reliable method for the early identification of unmet patient needs soon after they emerge and efficient deployment of limited professional staff.

Healthy parents' perceptions of their competence to meet children's needs during the terminal illness of the other parent were measured on five major domains of parent-child relationships and parental functioning central to children's healthy development. Significant declines from pre-illness competence were perceived, of which the greatest were in emotional sensitivity and responsiveness, and ability to set limits and impose discipline. Implications for the development of preventive intervention strategies are discussed.

This article describes leadership efforts within social work to promote, enhance, and shape the future of social work practice, education, and research in end-of-life and palliative care. The background and outcomes of the Project on Death in America, Open Society Institute's Social Work Leadership Development Award Program, and the 2002 Social Work Leadership Summit on End-of-Life and Palliative Care are reviewed.

One hundred eighty four families completed a twelve month parent-guidance (experimental) or a parent telephone-monitoring (comparison) intervention initiated during one parent's terminal cancer illness and continued until six months after the death. Children in the parent-guidance intervention reported greater reduction in trait anxiety and greater improvement in their perceptions of the surviving parent's competence and communication, a primary goal of the intervention. Identified problems in implementing evaluations of experimental interventions with bereaved children include the following: (1) Available and commonly used standardized psychopathology measures do not adequately capture changes in non-psychopathological but bereaved distressed, grieving children and adolescents. (2) Experimental and control samples usually have very few children with psychopathology (scores). Relatively small changes in scores within the normal range may be insufficient to allow measurement of meaningful differences between interventions. (3) Both experimental and control interventions must provide sufficient help to retain families for later evaluation. The level of general support and referral for other treatments, if adequately done, may be sufficient to blur differences in standardized psychopathology measure scores between any two interventions. It may only be in the specifically targeted intervention area that differences can be expected to be significant in adequately resourced families.

Social workers from clinical, academic, and research settings met in 2002 for a national Social Work Leadership Summit on Palliative and End-of-Life Care. Participants placed the highest priority on the development and broad dissemination of a summary document of the state-of-the-art practice of social work in palliative and end-of-life care. Nine Summit participants reviewed the literature and constructed this detailed description of the knowledge, skills, and values that are requisite for the unique, essential, and appropriate role of social work. This comprehensive statement delineates individual, family, group, team, community, and organizational interventions that extend across settings, cultures, and populations and encompasses advocacy, education, training, clinical practice, community organization, administration, supervision, policy, and research. This document is intended to guide preparation and credentialing of professional social workers, to assist interdisciplinary colleagues in their collaboration with social workers, and to provide the background for the testing of quality indicators and "best practice" social work interventions.

The second Social Work Summit on End-of-Life and Palliative Care was held from June 1 to June 3, 2005. Sixty representatives of more than 35 social work and other professional organizations with a commitment to improve care for the terminally ill, dying, and bereaved, attended and formulated key priority directions and initiatives that will further the field.

Much has been learned about childhood bereavement in the last few decades as studies have increasingly focused on the direct interviewing of children about their recovery from the tragic loss of a parent. It has been shown that children do indeed mourn, although differently from adults. Important moderating and mediating variables have been identified that impact their recovery from the loss of a parent, which can be the focus of intervention. When death is expected, the terminal phase of an illness has been found to be particularly stressful for children, yet seldom investigated. Similarly, few studies have explored the impact of development on children's experience and expression of grief. We present research findings that clarify phases in children's experience during the terminal illness, hospital visits, the death, and its immediate aftermath, as well as how the parent is mourned and issues in longer term reconstitution. Variations in children's responses in these phases are described as they were experienced by 87 children from 3 different developmental groupings: 3 to 5 years, 6 to 8 years, and 9 to 11 years. Recommendations are suggested for parents and professionals about ways to understand and support children during the terminal illness, at the time of death, and during the phase of reconstitution.

When caring for children who become suddenly and catastrophically ill, clinicians must simultaneously attend to a complex and rapidly evolving medical situation, as well as to the equally challenging demands of establishing compassionate relationships with family members and communicating well with colleagues. An 18-month-old toddler was brought to the hospital with severe head injury after being struck by a car. Over a period of hours, her condition evolved from prognostic uncertainty to the diagnosis of brain death and considerations of organ donation. Against this medical backdrop, the clinicians successfully established a trusting relationship with family members by careful attention to their emotional, informational, and care needs as they absorbed the devastating prognosis, took in the results of the brain death examination, and considered the option of organ donation. This case illustrates the importance of interdisciplinary communication, the vital role of social workers and other psychosocial providers with expertise in working with families, and the critical significance of mutual care and support for the clinicians who accompany families through these tragic life events.

Social work practitioners have the potential to make meaningful contributions to improving palliative and end-of-life care because of their work in varied and divergent practice settings across the lifespan, their role in addressing mental health needs, grief and psychosocial aspects of well-being, and their commitment to promoting culturally competent, effective, and humane care, particularly for the most vulnerable and oppressed members of society. The federal government and several national and professional institutes have called for steps to increase the participation of social work researchers as well as to improve the quality, quantity, and dissemination of social work research.This paper proposes a national agenda for social work research in palliative and end-of-life care.The agenda was developed by a multimethod effort that included an extensive analysis of the literature, discussions with a purposive national sample of social work leaders in palliative or end-of-life care, and consideration of established national research priorities.Eleven domains of palliative and end-of-life care and their related research objectives were identified. Their relevance to the mission and value base of the profession and to established national research priorities is highlighted.This research agenda should serve to stimulate social work research initiatives to improve palliative and end-of-life care, and ultimately inform direct practice, policy and professional education.

In the United States, more than 2 million children and adolescents (3.4%) younger than 18 years have experienced the death of a parent. When death can be anticipated, as with a terminal illness, and even when the death is sudden, as in the September 11, 2001, attacks on the World Trade Center and Pentagon, physicians and other health care professionals have an opportunity to ameliorate the impact of the loss. Developmental factors shape adolescents' reactions and responses to the death of a parent. Recent research in childhood and adolescent bereavement shows how health professionals can support the adolescent's coping strategies and prepare the family to facilitate an adolescent's mastery of adaptive tasks posed by the terminal phase of the parent's illness, the death, and its aftermath. Robert, a bereaved 14-year-old, illustrates some of these adaptive challenges.

Purpose: A qualitative approach was used to analyze the impact of development on the grief responses of 157 children from 88 families to the death of a parent from cancer. Description of study : Children from age 3 to 17 years were divided by developmental characteristics, derived from interview data, into five development-derived age categories. Results: The responses of children in different categories clarified the impact of development on their distinct expressions of grief, attributes of the parent they mourned, and the parent's tasks in enhancing the reconstitution of the child and the family. Clinical implications: This first attempt to find a way to segregate children into developmentally more homogenous subgroups led to the clarification of patterns of mourning behaviors that are clinically useful. The increased precision of findings, such as the way development affects the child's mourning and the related parental support they need, may help clinicians develop more specific interventions to help children cope with the death of a parent and guide parents in understanding their children's differing responses. The pivotal role of the surviving parent and the tasks required of that parent are important for healthcare professionals to understand and support.

Insufficient training of health professionals has often been cited as a major barrier to improving the system of care for dying patients and for the bereaved. Although specific problems have been identified for physicians and nurses, the problems of social work in this substantive area have only recently been explored. This study used a practitioner survey, focus groups, and a survey of faculty of schools of social work to broaden the information base. Results suggested that not unlike the professions of medicine and nursing, social work knowledge and skill development in the care of the dying is uneven and not integrated sufficiently with theoretical concepts and research. Social workers felt unprepared for this work by their master's level training and unsupported by continuing education programs. They recognized few social work scholars who could function as role models by providing comprehensive training, knowledge building, innovation, and advocacy. A program for leadership development was created to test new approaches to professional development in the care of the dying and the bereaved.

There is growing concern within the social work profession that the quantity and quality of current research in social work is inadequate to inform the major practice areas and meaningfully enhance the existing knowledge base. Various perspectives on this problem were recently presented in the report of the Task Force on Social Work Research (National Institute of Mental Health, 1991). The report concluded that social work research is currently in a state of crisis and made recommendations for curriculum changes, additional funding sources, and new staffing for key national social work organizations. The gap between social work practice and research was identified as one of the major barriers to the development of practice-relevant research. A range of different approaches to integrating these two specialty areas were suggested and described by participants of another recent social work research conference (Jenkins, 1992). Subsequently, Lindsey and Kirk (1993) questioned whether social work research is truly in crisis or whether it suffers from a chronic condition that reflects a historical underlying ambivalence toward scientific inquiry: "The social work profession's historical and ideological bias . . . favors action over theory, practice insight over scientific research, and good intentions over effective outcomes; this has led to a de-emphasis on research" (p. 378). These authors point specifically to the lack of expansion of social work research into leading private and public research universities such as Duke, Stanford, Harvard, Northwestern, Princeton, Cornell, Vanderbilt, Virginia, or Arizona as illustrative of the problem. They therefore recommend the development of increased research specialization at selected schools of social work that would become major social work research centers. Both reports agree on the seriousness of the problem for the future of social work as a profession, and they recommend consideration of a range of new strategies to bring about fundamental change in the profession in this area. The research effort described here represents one such strategy. RESEARCH IN HOSPITALS Historically two approaches to the development of research in hospitals have been used. Most frequently, in hospitals where social work research is done it is embedded in quality assurance activities (Berkman & Weissman 1983). Another model, reported by Turnbull, Saltz, and Gwyther (1988), by Simon (1991), and by Blythe and Tripodi (1989), emphasizes teaching research to social work clinicians to enhance their ability to understand and use research methodologies in their practices. A third model, based on our experience over a 13-year period, is presented in this article. This model emphasizes the establishment of a research unit as an integral part of a hospital social work department. Each of these models addresses the research issues differently. Of the three models, the one we present requires the most extensive commitment of resources. Its emphasis is on basic research such as developing knowledge of the processes of coping and adaptation and of the interventions most effective in enhancing these processes. The other two models focus more on management goals. In this third model, published research findings not only are a goal, but also define the success or failure of such a program. Our goal was to establish a unit that would ultimately be self-sustaining, funded primarily by federal grants and philanthropy. Another goal, which was partially met, was to develop a research program that would result in a mutually interdependent relationship between clinicians and researchers. To this end the research program was planned to undertake studies that would inform practice and program development to enhance the quality of life of patients and their families. For example, areas that were investigated over time included studies of the psychosocial sequelae of cancer survivorship, a broad range of studies of patients with acquired immune deficiency syndrome (AIDS), studies of preventive interventions in childhood bereavement, evaluation of interventions to reduce the prevalence of unmet concrete needs among outpatients with cancer, investigation of the psychosocial sequelae of being a caregiver to a seriously ill individual, and descriptive studies of the range of needs of cancer patients. …

In recent years there has been a growing interest among hospital Social Work departments, especially those associated with major medical research institutions and universities in initiating research which could inform clinical practice. Yet little has been written that describes the process required to develop social work research within health care agencies and institutions. In this paper we discuss some of the challenges social work departments will confront in developing a research program, and alternative solutions that might be considered in different institutional settings. We identify ways to: (1) select an effective model and develop institutional support for social work research; (2) prepare clinical staff for interaction with the research effort; (3) consider relevant factors in selecting topics for study; (4) identify personnel required for specific research functions; and (5) secure outside funding.

Psychological and emotional concerns of adolescents during a parent's terminal cancer are described. Compared to younger children, the adolescents' greater cognitive and emphatic capacities allowed them to be more aware of losses and of the parent's physical and emotional pain. Parental illness also precipitated conflict around issues of developmentally appropriate separation. The capacity to use intellectual defenses, search for meaning and deeper understanding, and seek help were potent coping abilities. Contrary to the prevailing view, most of the adolescents coped with stress without resorting to severe acting out.

The underlying psychological and emotional components of distress were examined in 87 children with a parent in the terminal phase of cancer. Common fears, concerns, misperceptions, and behavioral consequences are analyzed, as are more severe psychological and behavioral reactions. Implications for psychoeducational parent-guidance intervention are discussed.

Increasing longevity of the cancer patient has brought about the need for mental health professionals to help patients and families cope with stresses not only at diagnosis and death but throughout the course of the illness and cure when the survivor experiences late effects and societal barriers. Patients, parents, mental health professionals, physicians, and the public all have differing perspectives on problems facing the survivor. The tendency is for physicians to minimize problems in light of curing a disease that was once fatal. The public may be reluctant to acknowledge problems out of a lack of awareness that cure is possible. Differences in points of view may account for disagreements about the significance of problems associated with survival. Acknowledgment and understanding of these various perspectives are prerequisite to resolving problems and facilitating the coordination of care and support survivors require in their pursuit of a normal life.

This article describes four areas of knowledge for social work assessments that cover the ecological system of the patient and psychodynamics. In addition, it addresses the area of dis-synchrony, which causes stress for many patients. The author focuses on the area of dis-synchrony because she believes that social workers must be clear about the differences between reactions of pathological patients and strong reactions of psychologically normal patients to extraordinary circumstances. The literature on stress has begun to look at this aspect but is still open to a pathology bias. The social work profession needs to evolve new ways of thinking about normal people and their environments. The unique access that social workers have to the range of patients in a variety of settings creates the opportunity for them to make a significant contribution to the understanding of the full range of human experiences. Moreover, the sharing of knowledge between workers in mental health settings and those in medical settings is relevant not only in the provision of direct service, but also in the development of hospital policies and national policies regarding health care for individuals and their families.